Saturday, May 29, 2010

Memorial Day


I've written before about the veterans in my family tree for Armistice Day last November.  But I left one out and this weekend's holiday is a good time to remember him.

My father's sister, Caralou, married Charles Chapman after graduating from Miami University in Oxford, OH.  My grandmother had gone there for a year, and my father followed suit, graduating from Miami probably 8 years later (he spent 2 years in the middle of his college career in the Army).  Caralou graduated either in '39 or '40 and I think she and Uncle Chuck were married before World War II was declared by the United States in 1941.  Uncle Chuck enlisted in the Air Force.  It was the Army Air Corps or Force at the time--the Air Force did not become a separate branch of the service until 1947.  It appears from the mat that surrounds the photograph I've posted above, that Uncle Chuck was stationed in California, as the photographer is Austin Studios, California.

 I was on the enclosed back porch of  my great Aunt Bebe's house in Paulding Ohio, late one evening in August, 1978.  The family had all gathered in Paulding to celebrate my grandmother's 80th birthday.  Uncle Chuck and my father and my brother, Mark, and I were all sitting out ton the porch, having just one more drink, when Chuck and  Dad started talking about their World War II experiences.  I had never heard any stories of the war from anyone in my extended family prior to this.  But enough time had elapsed, perhaps, that they felt more free to tell war stories.  My father's were mainly of major delays on long, crowded troop trains--first to Texas where he received his basic training, and then on to South Carolina where he was stationed for the duration of the war.  He had trained as a medic, but his eyesight was so bad, the Army would not send him overseas. 

Uncle Chuck's story was a revelation for me.  From his initial posting to California, Chuck had been sent to England to fly bombers.  He didn't see much action because he was involved in a horrific accident on the ground when his plane caught fire (the details are gone now with the passage of  30+ years) that left him with burns all over his body and face. His eyebrows and his eyelids were burned off entirely. He had to place sterile cotton over his eyes at night to sleep. He was returned to New York to convalesce and to be operated on in some of the first plastic surgery ever done.  The doctors replaced his eyelids with skin grafts taken from his body, and it worked!  Until that night, I had never noticed the brownish scars that were around Uncle Chuck's eyes and on his forehead.  Time's passage had lightened the keloids and unless you looked closely, you really didn't see them.  However, at that time, immediately after the accident, he said, he looked monstrous.  But Caralou, who had joined him in New York, steadfastly stood by his side during this period.  When they would walk down the streets in NYC together, people would visibly flinch when they caught sight of Chuck's face with his burns and his missing eyelids.  Caralou staunchly ignored the reactions of  the passers by, and continued talking to Chuck as if there was nothing wrong.  Uncle Chuck confided to me that he would do anything in the world for his wife as a result of her loyalty to him at the worst point of his life.

And he did.  After his discharge, Uncle Chuck became a geologist and they moved to Casper, Wyoming where he worked for many years in the oil industry.  They never had children, just a succession of white miniature poodles named "Boo."  When Caralou died, Uncle Chuck endowed a hospice program in Casper and a piano scholarship at Casper College in Caralou's name.  At his death, these endowments were renamed for both of them.

Friday, May 28, 2010

Status Update

As most of you know, on May 13, 2010, I had surgery to remove a malignant lymph node and send it in for testing to determine if I could be part of a clinical trial involving a new drug, crizotinib, which is targeted to adenocarcinomas (non small cell lung cancer tumors) which have something in their genetic makeup termed an ALK rearrangement. Now you will have to bear with me, because my understanding is fairly limited, but here goes my attempts to explain.

Current research into successful treatments for lung cancer indicates that non small cell lung cancer is not monolithic but rather an aggregation of many types of tumors, and testing for genetic mutation can provide information that can be used to tailor the treatment to the tumor.  The first breakthrough occurred with testing tumors for EGFR (epidemral growth factor) expression mutation (or "EGFR") and those who tested positive for EGFR  were greatly aided by two drugs, Iressa and more importantly Tarceva.  However, these positive results were limited to  individuals whose tumors tested positive for EGFR.  Here's a good summary of the EGFR mutation from

I was prescribed  Tarceva in January 2010, after my first line treatment (chemotherapy) failed to keep the tumors from growing, without being tested for  EGFR  because 1) there was no tissue left from the two needle biopsies to test and 2) GH did not want to pay for the costs of the testing.  Initially it seemed that it was an acceptable risk to take without the testing, because the first round of post-Tarceva ct scans in Feb. 2010, showed shrinkage in most of the tumors.  However the April 28 ct scans showed that the tumors had regained their size and the mediastinal one had in fact doubled in size since the December ct scans. So it appeared that my tumors were not, in fact, positive for the EGFR expression mutation.

However, if my tumors could be formally shown to be negative for the EGFR expression mutation, they could then be tested for the ALK rearrangement (or "ALK").  If the tumors then tested positive for ALK, I could be enrolled in a clinical study of a new drug, critzotinib, which has shown great promise stalling  or even reducing growth in tumors with the ALK rearrangment. 

So, the lymph node came out on May 13, and I have been waiting for the test results.  Last Saturday night, I sent an email to my oncologist at Group Health, asking when the EGFR results would be available.  He wrote back to me on Tuesday, May 25:
I have spoken to two people in lab at UW. One says they run the test every week. The other says they have your sample, hope to submit it by the end of the week, but could take 2-3 weeks for results. We'll keep tracking, but seems unlikely we'll have anything for at minimum another week.

I forwarded this email to Dr. M at the Seattle Cancer Care Alliance, almost as soon as I received it, and asked him if he could help clear up the dichotomy.  21 minutes later, Dr. M emailed me back:

I talked to them today.

The first test should have results by the end of the week (so they tell me). After I spoke with them they will start simultaneously the ALK testing as well.

More by the end of the week
So today came.  No word.  I had a followup visit in surgery today.  When I was first interviewed by the surgery nurse, she said that the results were back according to the screen she pulled up with my name.  But she could not give them to me, although the Physician's Assistant, who I was seeing in lieu of the surgeon (because he was on vacation) could.  So Diane, my friend who went with me, and I got quite excited.  Unfortunately, when the PA showed up these were the results in the computer:


COMMENT:  A block is sent to the University of Washington for EGFR testing
A) L. supraclavicular lymph node (sent fresh)

Received in a container labeled with the patient's name and "left supraclavicular lymph node biopsy-in saline" is a 1.6 x 1/3 x 1/0 cm encapsulated tan pink lymph node candidate, with attached fat.  The lymph node is serially sectioned to demonstrate pink slightly firm and fibrous parenchyma, and is entirely submitted in 1-2.

Testing for EGFR is requested per Dr. W.  Per Dr. R, the specimen is formalin fixed and embedded for EGFR testing from the paraffin block.

The lymph node is almost entirely replaced by moderately differentiated adenocarcinoma.  There is an associated desmoplastic stromal reaction.  Tumor cells show clear cell change as well as cystic areas of necrosis.  Tumor extends to the edge of the tissue.
This initial GH read on the node was done May 14, but not released to MyChart where I could have viewed it.  And the PA confirmed that there were no further testing results at Group Health.

At 4:28, I emailed Dr. M and asked if he had heard anything about the EGFR testing.  He called me at 4:29 to tell me that the results of the EGFR testing were that the two major exons had tested negative for the EGFR expression mutation.  Which meant that the tissue sample could now be tested for the ALK rearrangement.  Dr. M said that  will be done next week and the results should be available, again by the end of the week at the latest. 

I am not there yet, and I may not qualify in the end. But I have learned (or relearned) a few things over the past two weeks.

Thursday, May 27, 2010

Dogs, Love and Death, part 3

There are a couple of items that I've written about on my blog that I never quite finished.

The first was the story of the dogs that I have owned and loved.   I wrote parts one and two and never brought it up to date.  I guess it was mainly because to write about my dogs, I have to write about death and even in January of 2009, I found it very difficult to continue discussing them.  These days, it's even harder and I am glad that I wrote about the toughest parts of my dog owning history then rather than now.  But there remains the story of Heidi.

Heidi was the second of the two miniature dachshunds that I adopted in September, 1999.  She was older than Alpha--the vet thought she was 8 or 10.  Heidi was  more of a dowager and she possessed none of Alpha's energy or personality.  She, however, was a great mother.  After Alpha died and we adopted Scooter, she welcomed him to the family and spent a great deal of time grooming him and making Scooter her surrogate puppy.  She had blue eyes with brown flecks, which her owner assured me was typical for a tri-color miniature dachshund.  She was a good sport, uncomplaining, and she loved her food.  She would 'sit' as we ate at the table, to beg for scraps.  And given that she had an ample rear, she could 'sit' very well.  Her reserved bearing meant, however, that she received less attention than the other two.   But that seemed not to affect her, as she was always willing to go for walks without complaint even when it was hard to keep up with the rest of the pack.

In late July of 2006, Seattle had a scorcher of a week.  The dogs were in the back yard, which is quite shady, but this week, the heat seeped into even the shady parts.  I had been busy for two evenings, preparing dinner for the crew that was re-roofing my house and I was not paying close attention to the dogs.  Friday night I had a date to the adult party at the pool where we had been members for 13 years, so I was even more distracted.  I got a call from my boys 2 hours into the dinner party that something was very wrong with Heidi.  Tim, my date and a dear friend, took me home quickly and when I arrived I found that Heidi was having many, many seizures.  She could not walk and was drooling suds. 

We bundled her into the car and the boys and I drove to the emergency veterinarians on Lake City, where they took Heidi in immediately and we paced for an hour.  Finally, they brought us back to the exam room, and although Heidi was calm, she was not focusing at all and was still having petit mal seizures.  The doctor said that as soon as they would stop injecting her with the anti seizure drugs her seizures would start again.  There was nothing we could do.  So I held her and the boys held me as they  put Heidi to sleep via injection.  The boys and I cried long and hard that evening. 

A week later, Heidi's remains were returned to us after cremation, and she rests under the cast stone statue of a dachshund that originally was placed over Alpha's grave in the backyard of our old house.  Heidi  was a good dog.  I'm sorry I don't have a better picture of her to share.   The one above shows her waiting for treats from the table at the old house with Max, having given up on her traditional method of  'sit' to cajole me.  
I grieved for her, much longer than I anticipated.  It's those steady dear friends that you take for granted, whose passing tears a bigger hole in your life than you thought possible.  As a result, Truffle did not join our household until almost three years later, in June, 2009.

Tuesday, May 25, 2010

Sitting Here In Limbo

Just to let you know how things are going around these parts, well, uh, we don't know quite yet.  The surgery was the 13th of May, the tissue from the malignant node was sent to UW thereafter, and the results are not back yet.  Waiting is excruciating.  Let me tell you a little story why.

I'm on several internet sites that are out there for folks who have been diagnosed with lung cancer.  One site, is excellent--organized and run by oncologists.  Another site,  is more touchy feely and overrun with folks who are determined to talk about and praise homeopathic and naturopathic treatments. Many of the more recent members in this lung cancer lounge have very little good to say about big Pharma or the established medical profession.  It wasn't always like this when I first joined inspire back in January, but in the past 3 months the voices of the Gerson and laetrile advocates have been drowning out those like me who are supporters of traditional allopathic medicine  and who think that medical treatments need to be rigorously tested before being prescribed.  

But given the current survival rates for lung cancer, it feels a lot like whistling past the graveyard.  Because even where there is positive response to lung cancer treatment, these results are measured in days.  Take a look at the conclusions in a good article written about what happens when you drop the dosage of Iressa or Tarceva in patients whose tumors are responding but the patients are suffering from bad side effects.  This is found at cancergrace and was written to give the lay person a better understanding of recent research in the field, by Seattle oncologist, Dr. Jack West, one of the best lung cancer specialists around:

The retrospective analysis compares the results of 52 (46%) of patients who continued at full dose Iressa with the 62 (54% (!!)) who had a dose-reduction of Iressa, generally switching to once every two day treatment (because there are no lower dose tablets of gefitinib than 250 mg).

The analysis showed no significant difference at all in outcomes, and even a numerically longer median progression-free survival of 351 days vs. 301 days, and median overall survival of 928 days vs. 852 days, for the lower dose vs. full dose recipients, respectively.

This doesn’t mean that lower dosing is a superior strategy (these are not close to statistically significant differences, and the groups aren’t huge), but it should allay anyone’s fears that the people who need to reduce dose of their EGFR inhibitor due to challenging side effects are compromising their treatment — at least for patients who have tumors with an EGFR mutation.

So, in the best case scenario, where the drug is working to suppress the cancer the median overall survival rate is less than three years! 

Lung cancer is an implacable foe, one that does not rest.  It seems immune to most of our current treatment regimens.  And I think this is the cause of much of the hysteria and the adoption of unproven and dangerous treatments by many lung cancer patients, not just those on inspire. Early on in my time online with inspire, I made the acquaintanceship of a very nice young fellow named Joe.  He was 24 and his mom had been diagnosed with late stage lung cancer.  She died on May 22, 2010, 15 months after her diagnosis.  She was my age or younger from what I can tell.  This is normal for the course of the lung cancer.  But, naturally, Joe is devastated.  15 months.  It's like compressing the next 20+ years that I thought I would have, into less than 2.  And 8 months have gone by so far for me.  I try not to go there and refuse to think about what effect my disease progression and death will have on my own children, who are 24, 23 and 20. 

At present, I have no treatment for my lung cancer.  There is no radiation or chemotherapy scheduled or any prescribed drugs.  I am simply waiting for the EGFR results to come back before new plans can be made.  And if the EGFR results are negative, plans will still have to wait because then I have to go through an additional set of tests for the ALK mutation, and they can also take quite a bit of time.  Finally, the chances that I will have the ALK mutation, despite Dr. M's optimism, remains very slim.  Only 3-4% of the population of lung cancer sufferers have this mutation.  But the drug results are so incredibly positive that it would be foolish not to try for it.  Again, hope winning out over reality.  But this time, it is in the context of a medical treatment that has solid clinical results underpinning its use.

If I don't qualify for the ALK meds, then I will have to consider other less fun options for my plan.  Like more chemotherapy using other drugs, or radiation to the tumors.  Both of these are severe treatments which also do not have very good returns on them.  But they are something.  And this something has been determined to be better than nothing.  At least for now.

What this all boils down to, is that my life has been reduced to a series of trade offs.  In exchange for hopefully, additional months of life, I give up my sense of taste, my hearing, and my peripheral sensations to take chemotherapy.  I give up my clear, normal skin, and thick hair to take the Tarceva, also supposedly for additional months. I have an operation on my paralyzed vocal cord, and it gives me back half a voice but I've still lost my ability to sing.  A malignant lymph node is surgically removed for testing, and I am left with a shoulder that is numb and exquisitely painful around the edges.  Although this numbness should be temporary, it's been 12 days now.  As the disease progresses, the trade offs will become more dire.  Eventually there will be nothing more to trade off.  Basically, this is the normal aging process on steroids. 

This is why waiting sucks big time right now.  Because there is no big time left.

Sunday, May 23, 2010

Stoop Sitting and its close relatives

When I lived on South Mill Street in Lexington, Kentucky (close to Jefferson Davis' youthful digs while he was a student at Transylvania University, down the hill from my apartment), one of our favorite, aimless pastimes was to "stoop sit."  This was actually performed at my dear friend Dave's house, on his stoop, across from the house pictured above. The houses on Mill Street were all built in the late 1700's, early 1800's.  On warm nights, we would gather on the stoop at Dave's place and just sit outside next to the sidewalk, talking and watching the world go by.  Poor Dave, like many on the street, did not have air conditioning and as a result, stoop sitting was the only way to get cooled off on those hot, muggy, Kentucky nights.  As I lived three doors down, it was easy to walk on over and sit with whoever gathered there to watch the comings and goings of Lexington street life in the late 1970's. 

And some nights we would hit pay dirt.  Especially when "Sweet Evening Breeze" would walk by.  Elaborately coiffed and dressed, 'Sweet Evening' would sashay by us and flaunt his/her ripe African- American sexuality.  It felt like a smaller version of the Savannah, Georgia, culture of decadence depicted in John Berendt's Midnight in the Garden of Good and Evil that I read many years later.  During the day, we were visited by another black resident, who would shake his index finger at us and utter loudly in a sing song voice, "Santa Claus comin' to town."  Odd to hear it in July.

Then there was, of course, the "Shit Sandwich."  This occurred when David or Tim (now the Klickitat County Prosecutor) would yell "Shit Sandwich" at the top of their lungs and grab my friend, Mary Pat, in a bear hug, with her on the inside and the two of them on the outside.  Hence the name.  It could be followed by 'elf wrestling' where one of them would attempt to take Mary down.  Usually her stentorian voice warning them of the ills that would befall them if they so much as tried that, would be enough, unless they were in a major mischievous mood.  Then all elf would break loose.

Finally, I would be remiss if I did not mention the Sunday morning ritual at Dave's place--of the dramatic reading of the wedding posts in the Louisville Courier Journal.  Sunday at Dave's was where I ate my first toasted bagel with cream cheese, and heard Tim read the wedding posts from the Sunday paper with a special dramatic flair. I doubt that when the folks  put their weddings in the paper, they ever thought that their news would be read and dissected with the gimlet gaze that Tim focused on them.  It truly made Sundays memorable.  I only wish that Tim had read these wedding announcements.

The First Rock Star

I went to Ten Grands at  Benaroya Hall in Seattle last night.  The concept at first seemed not so interesting--ten grand pianos on the stage?  But the execution proved to be really really fun to watch.  There was quite a bit of variety in the music offered both collectively and singly by the pianists.  As someone who had taken piano for 11 years to my junior year in high school, I really enjoyed watching them perform together.  But as someone who sang in choirs for 30+ years--in junior high, high school, college, and in my church choir until my cancer paralyzed my vocal chord--it was a riot watching the pianists try to play together.  Because, really,  pianists are used to going solo either with orchestras or jazz bands or on their own.  To be honest, they are prima donnas.  They are not used to working with other pianists, unless it is 4 hands at one piano.  So they have a hard time seeing what their 9 compatriots are doing not only because they are used to being the star but because their hands are all hidden behind their huge instruments.  As a result, the performance, at times,  tended toward 'mud,' as my friend Mary put it.  But the solo pieces, and those where youth choirs or string players joined in were very great fun.  I could not tell you which piece I enjoyed the most, as the variations in styles and forms made it all go by quite quickly. 

There was an emphasis last night, on Frederic Chopin.  One, because it is the 200th anniversary of his birth.  But two, because his compositions are the kind of pieces that classical pianists love to play.  Large, demanding, emotional works that wring the most out of the performer and the audience.  I know Ken Russell thought that Franz Liszt was the first rock star, as he tried to demonstrate in his movie, Lizstomania.  Liszt may have been a rock star too, but Frederic Chopin was the first real rock star.  After all, he served as Liszt's mentor.

Here's what The International Library of Music, published in 1936, has to say about Chopin in their biography of him:

Liszt describes Chopin as of middle height, slim, with flexible limbs which appeared almost fragile; delicately shaped hands and very small feet; an oval face of pale, transparent complexion, crowned with long silky hair of light chestnut color; tender brown eyes, which lit up strangely  when he spoke; a finely cut aquiline nose; a gracious smile, and a soft and usually subdued voice, and a general distinction of manner which caused him involuntarily to be treated en prince.  The nature of his charm is felicitously told  by George Sand [his lover for ten years].  "The delicacy of his constitution," she says, 'rendered him interesting in the eyes of women.  The full yet graceful cultivation of his mind, the captivating originality of his conversation, gained for him the attention of the cleverest men; while the less highly cultivated liked him for the exquisite courtesy of his manner."

...There has been no surer sign of decadence in an art than to allow the love of color or ornament to obscure the sense of form; and it is characteristic of Chopin's refinement that his music, so original in its inspirations, so fanciful and elaborate in its ornamentation, never becomes formless.  Its tenderness was no doubt the secret of the extraordinary influence he exerted over women, and of his keen sympathy with everything that concerned them; but it never would have compelled, as it did, the instant admiration of musicians of every shade of sensibility had it not possessed the far higher quality of absolute conformity to artistic good taste.

Chopin died at 39 of tuberculosis, and his heart was buried in Warsaw, Poland, while his body was interred at the Pere LaChaise cemetery in Paris, where he had spent his adult life.  I discovered Pere LaChaise when I was a poor student travelling and then living in Europe in 1978-79.  It is a fabulous cemetery, home to the likes of Heloise and Abelard (together in death!), Oscar Wilde, Gertrude Stein, Edith Piaf, Balzac, Sarah Bernhardt, and dozens more.  When I went, it was initially because it was free, and very few things are free in Paris.  But I was enchanted by the fancy graves and found not just Chopin but Jim Morrison, another more contemporary rock star, buried there (although Morrison's resting place is ill treated by his admirers). Pere LaChaise is well worth your while to tour on your next visit to Paris, despite being a bit out of the way.  Especially if you visit Edith Piaf's grave.  There will be a number of French folk gathered around 'the Little Sparrow' to grieve and reminisce, and they are only too happy to talk about her to you, a friendliness you may not find anywhere else.  But I was struck in 1978 and again in 2007, when I returned to Pere LaChaise, at how beautifully Frederic Chopin's grave is kept up by his admirers in Paris.  He truly was their first rock star.  And a well deserved one at that.  Here is his grave:

Saturday, May 22, 2010


Today is simply a Was (Not Was) sort of day.  I hope you will click on the title of the post and see the truncated YouTube video of one of the greatest underrated bands to ever come out of Detroit.  There's a lot more polished stuff of theirs on YouTube, but this snippet conveys to me their playfulness and musicianship.   Thanks to a recommend by Nancy Nall,  I saw them over a year ago in Ballard,  and had the time of my life.  Here's hoping they come back to Seattle soon.

Friday, May 21, 2010

Dogs update

As many of you know, I am currently mom to three dogs: Max the black lab and two miniature dachshunds, Scooter and Truffle.

In April the dachshunds had  time at the veterinarian's.  Scooter had bladder stone removal surgery and Truffle had ringworm treated  I've written about those.  But Max also made a trip in May.  He had surgery to remove a growth on his eyelid that was interfering with his sight.  Aging labs are prone to fatty growths under their skin.  He has several on his trunk but they don't seem to interfere with day to day activities.  This growth made his eye constantly red and it looked painful.  So in he went.  I was offered a cone of shame after the surgery to make sure he didn't bother it.  I declined because I didn't think he really could reach it. 

What I didn't figure on was 10 lb Truffle and her 'helpful' cleaning ways.  She likes to lick Max's face and ears for him, and has been doing this for many months.  I think it's part of her way to ingratiate herself as the new dog but also as the only female, I think she's taken it upon herself to make sure the boys are looking their best.  So we had a number of set tos when she tried to clean Max's eye for him.  Her feelings got hurt when I yelled at her, and she would go off to pout, which she does ever so well.  Must've learned it from me.  I can remember my mom telling me when I was little, that my lip was stuck so far out that a little bird would come sit on it.  If Truffle had lips I would've said it to her.

Max also now needs to get up in the middle of the night and go outdoors.  I can identify with those middle of the night excursions.  But I wish he would coordinate better with me, because I'm not getting my beauty rest as a result.

And Truffle has turned to a new occupation.  She is pulling back the corner of my oriental carpet and shredding the binding underneath.   Can't win for losing.

Thursday, May 20, 2010

A Housekeeping Note: comments

Comments:  love 'em.  Shows someone's reading. 

I have the authority to allow a comment to be posted.  And I will and do welcome them.  Except in three situations. 

The first is gratuitous graphic language and abuse.  Been there.  Done that.  Don't need to revisit.  No how.  No where. 

The second is spam. 

And the third is where someone is using the comments section as a means to try to sell something.  So if you post a comment that has an internet address for the purpose of commerce, I'm not going to go there.  Sorry.  But those are the rules.  And arbitrary and capricious as they are, they are mine.

Tuesday, May 18, 2010

How time changes things

This story goes back 17  years or so, to the time when my children either were enrolled or getting ready to enroll in grade school.  Now we had recently moved into the neighborhood of View Ridge, so our children could attend what was regarded as one of the better public elementary schools in Seattle.  At least that was what we thought when we sold the house in Wallingford, and decamped for View Ridge.  Once things got going a year later in 1990, we discovered that what was supposed to have been a paradise of learning was actually a battleground between the principal, the teachers, and the parents. 

The principal, Teo C., seemed to be unfit for the job.  His academic or teaching credentials were negligible as far as I could learn.  However, he did distinguish himself in the way he dressed and behaved.  He wore a mullet and liked to wear strikingly inappropriate outfits like the black and white houndstooth cuffed shorts and jacket with white knee socks or the tight leather pants with a matching leather jacket.  His favorite pasttime at the school was directing the school buses in the morning and afternoon.  He wasn't much interested in classroom performance.  Instead, what I remember of his management skills is that he would approach one of the teachers and tell him that certain parents had it out for that teacher, but not to worry, he would protect him.  He also would tell parents of prospective students from the neighborhood, who were visiting the school, that they wouldn't like it at View Ridge and should seek another elementary school.  There were a number of other serious grievances, but with the passage of time, I have thankfully forgotten them.  The files are in my garage and I can resurrect them, if more specificity is required, with a half day's notice.

As more and more neighborhood kids dropped out or didn't enroll, students from the south end would be bused up to View Ridge.  These were students who had been suspended or expelled from their home schools for disciplinary issues or late matriculating students whose parents hadn't enrolled them on time to be assigned to a school closer to their home.  What this meant in practice was that these students' parents were not involved in their education--they never showed up for curriculum night, and many never came when contacted by the administration about serious behavioral or academic concerns.  Some of these out of district students were making attending the school unsafe for the neighborhood kids, and we, the parents fromView Ridge, were worried.  Academic scores were plummeting and morale was very low.

I was vice president of the View Ridge PTA in 1993, and together with the other PTA officers, we convened a group of concerned parents to talk about the situation.  We met off site and discussed our problems for several hours.  Based upon our discussion, another attorney parent and myself drafted a letter to the Seattle Board detailing the numerous significant problems and shortcomings of this principal.  Ultimately, the letter was signed by over 100 families.  From our meeting and through talking with other parents as part of the drafting process, it turned out that there had been many letters written to the Seattle Superintendent or the School Board about this principal over the 7 years he was at the school, but as they were sent in individually, they were not given much or any attention.  We thought that by creating a large turnout of parents, the Seattle School District would do something after they'd received the group letter.


The District did bend enough to set up a meeting with a designated number of parents--we met with an assistant Superintendent.  She professed surprise that there were problems with our elementary school.  And then she promised to put the principal on double super secret probation which meant that, if he did not live up to the probationary terms, something would be done the next year.  "Next year?"  someone exclaimed, "This has been going on for seven years!"  Ah, she responded, but this was the first that the School District had really heard about it, and the principal, through his union, had rights (note I am normally a big fan of unions.  Here, not so much).  We, the concerned parents, were watching the elementary school hemorrhage good students, good parents, and even good teachers for the past seven years and these yahoos counseled patience?  I finally raised my hand and asked, "What would it take to get rid of him right now."  Oh, the Assistant Superintendent replied, it would have to be something very serious, like a sexual misbehavior sort of thing.

Oh really?  We had heard rumors through the grapevine that the principal had been quite chummy with the school secretary.  Both were married to others.  And in fact we had heard that something had happened with them that had involved the  police.  But other parents who had been there longer than I had, had reported that after searching the Seattle police files, nothing was found.  Now I was working for the federal government at the time and not acquainted with either the Seattle police records or the state court system, but a friend and fellow attorney who was a partner in a small Seattle maritime firm pointed me in the right direction for local research.  I went down to the Seattle courthouse and looked through a bunch of records.  Nothing turned up.  Then the light bulb turned on.  What if it was in King County and not in Seattle?  Bingo!  An expanded records search turned a plea bargain up in Shoreline District Court, north of Seattle in King County.  Three years previous, the principal and the school secretary had given an Alford plea to charges of public indecency! 

I got a copy of the court record documenting the charge and the plea, helpfully obtained from the Shoreline court by another elementary school parent who could drive up there during the work hours, and called  the Assistant Superintendent to inform her, that playing by the School District's rules, it looked like we had fulfilled their requirements for obtaining a new principal.  This search had taken from May to August and it was a week or so before school was going to start.  I told her that we had a copy of the pleas, and that if something was not done about the principal, we were going to go to the press. 

The next day, I went to view the police record and criminal citation,which would have given me the facts surrounding the charge.  They were gone.  The School District had checked them out and I was told that there were no copies and they couldn't possibly know when they would be back.  So I returned to the King County Superior Court records and discovered that the wife of the principal had sued him for divorce following this incident.  And that the divorce record had not been sealed by the judge.   And that in the plea for divorce the ex-wife had helpfully attached copies of the police report and criminal citations to her petition, plus a declaration that he had forced her to work at the bar he owned while she was pregnant with their child.   I spent a lot of time and quarters copying that file.  But I had the information on the circumstances surrounding the citation. It involved one of the principal's several Corvettes, the school secretary, and a not so private parking place next to the golf course that is east of  I-5 by 135th Avenue NE.  It seems that a resident of the neighborhood saw the two of them going at it in the Corvette, and phoned the police, who showed up and caught them in flagrante delicto (a hand job) and issued  the criminal citations.  I then informed the School District that we had the full record behind the plea to the indecent exposure citations of the two of them. The principal was removed the Thursday before school started the next week.

It was a wild and woolly time.  After he was removed from View Ridge,  the principal was assigned to a middle school.  I called up a friend of mine who had several children at that middle school and informed him of the circumstances surrounding Teo's ouster from View Ridge.  My friend lodged a complaint and got parents involved and the prinicipal disappeared from that school as well.   I lost track of him at that point.

Which was fine, because View Ridge prospered after his departure. The new prinicipals appointed in his stead helped bring back the neighborhood focus, and the morale of the staff, students and parents as well as test scores, all went up.  I have terrifically fond memories of one of them--Mr. Brown, the first permanent principal successor, who would hold weekly school assemblies with the kids in the lunchroom/auditorium, where he'd ask the kids, "How you feeling?"  And the students would yell back, "I feel good, G-O-O-D, good.  HUNH!!"  And at one point the school received a major donation from the Gates Foundation, because a savvy parent who discovered that Bill Gates had attended View Ridge many years ago, and had used that as the basis for a successful appeal for a sizeable grant.  Teachers and parents were working together to make a better school.  Things were good, G-O-O-D,  good. HUNH!!!

In retrospect I really would have preferred that the School District remove the first principal for reasons that went to the substance of his performance as principal, rather than the questionable ethical behavior.  It was not a fun thing to have to dig up and present.  There seemed to be enough issues that were immediate reasons for firing if not reassignment.  But the School District set the rules.  So we were forced to play by them. And the facts that fit into their rules were out there, if one was diligent enough. 

Several weeks ago I discovered that this fellow is still working for the Seattle School District, and probably has through all this time.  I saw his name and photograph in an article in the Bar News, which is the monthly publication of the Washington Bar Association.  According to the article I read, the former principal is teaching high school students, and getting them involved in careers in the law.  He's doing a good job of it per the article.  Got a special mention for his work.

So where did that name, Moe, come from anyway?

When I started reading and posting on other people's blogs in the early 2000's, the sites were mainly political in nature.  Because of my work with a state government agency, I didn't want to post under my real name as I thought that I might get into trouble and be accused of abusing my position, which is, in fact, non partisan.

So I turned to using a pseudonym, which has been an acceptable way to talk politics throughout our country's history.  I chose a name that was not immediately identifiable as female, because I'd found that women writing on political sites were taken less seriously than men and were subject to far more ridicule and abuse.  And the Moe moniker was an homage to two things, one of which is readily apparent from the picture above, i.e. Moe Howard of the Three Stooges, a childhood love of mine.  The second was the  "Just Say Moe" slogan, which was popular in th early '80's and was a satiric take on Nancy Reagan's "Just Say No" campaign on drugs.  I was convinced at the time, and I think the facts bear me out that "Just Say No" was a horrible, depressing failure in the war on drugs.  But what I also took from it was something from my teenage years.

I grew up the oldest of five children.  My parents were strict disciplinarians, and used physical punishment where they saw fit.  That's the way it was, and I didn't know anything different.  It wasn't used often, but it was there.  And it worked.  I remember my parents getting compliments from other adults when we went out to dinner for how well behaved we were.  And we were always found sitting quietly in a church pew on Sundays at St. John the Evangelist Catholic Church with them.  So when I started high school and began dating, I was told by my parents that if I was asked to a school sanctioned dance by a boy and I turned the fellow down, then I could not go to the dance with any other boy.  It seems that my father had experienced a number of upsetting turn downs from women in his high school years and he was bound and determined that his daughter not do that to any poor fellow.  So there was nothing like, "Just say no," in my dating world.

What that meant was that I had to be very sneaky and underhanded about the time Homecoming or the May Dance or prom came up because I knew that I had only one chance to be asked by a guy that I wanted to go to the dance with.  It became a huge orchestrated event, with my girlfriends talking to the male friends of the guy I wanted to ask me out, to make sure that there was interest there.  If not, we moved on to another acceptable candidate.  I just could not be asked by someone I didn't want to go out with, because then my chances of going were ruined.  You might wonder how it could be that my parents might have any inkling about who asked me in the first place.  You forget that my father was a pediatrician in Defiance and saw a large percentage of my classmates and their parents as part of his practice.  Plus, Dad was on the School Board.  So it really felt like anything I did or did not do would be found our eventually. 

There was the time I was seen talking to one of the DHS cheerleaders at the Skylark Club.  The Skylark Club was Defiance's teen hangout and it was open Friday and Saturday nights for dancing to records and playing pool and hanging out.  This cheerleader had been drinking and it was obvious.  Next day, the rumor was all over Defiance that I had been drinking too because I had been spotted with her.  Luckily  when I had returned home from the Skylark the previous evening, my father had still been up,  reading, which was something he liked to do, and was usually where I could talk to him by myself.  I had in fact taken advantage of his being there and stopped in to chat with him.  Thus, he knew from our discussion that I was not drunk, nor had I been drinking.  So I weathered that storm but it was yet another indication that my actions were under a microscope.  So I simply became adept at playing the dating game and getting the right guy to ask me to the next dance.  When I discovered that I could in fact say "No" without fear of retribution, it was rather a revelation.  But that  took a while.

So there you have the story behind the nick name. 

One ps.  I did have one time where I was trapped by the parental system.  I  had been talking to a senior, Kirk Schierman (pronounced 'Charmin') after lunch in the hall, spring of my freshman year.  There was no ulterior motive on my part, we had just been thrown together by happenstance and had a nice chat.  Kirk came up to me the next day, and asked me to go to prom with him.  I was a freshman and rather flattered that he had asked, and thinking it through figured that I couldn't go otherwise, so said "yes."  [If you are reading this, Kirk, I'm sorry, I was just a shallow freshman!]  The evening rolled around, Kirk came to the door, met my parents, and then we were out the door walking to the car, when my 4 younger siblings all darted out to the front lawn and shouted as loud as they could:  "Don't squeeze the Charmin!"  That was a punch line to a Mr. Whipple tv ad for bathroom tissue from the time.  Can't really blame my brothers and sisters now, but as I recall, after a post dance meal at Frisch's Big Boy I was escorted back home by 11pm.  Poor Kirk.  I hope things turned out better for him later on.

Monday, May 17, 2010

Collateral Damage

In my post immediately before this one, I mentioned my regrets at the appointment of Clarence Thomas to the US Court of Appeals for the DC Circuit.  This is because that appointment was the stepping stone to Thomas' subsequent appointment to the Supreme Court.  Thomas' Supreme Court hearings in the Senate were a series of galvanizing moments for me.  Rather than focusing on Thomas' real weakness--his lack of legal ability--those opposed to his nomination chose a different tack to try to derail his nomination.   They chose the more volatile issue of the allegation that he had sexually harassed Anita Hill when she worked for him when he was head of the Equal Employment Opportunity Commission or EEOC.  As I listened to Anita Hill testify, she could have been speaking about me. 

My experience came early in my legal career.  At my first job.  I had been in a government office in Kentucky  for about a year, when the head of my division was removed and a new supervisor, Ray, was put in place.  He had been in a different part of the office, the criminal section, and he was sent over to my division to inject new life into a program that seemed to be struggling.  Ray and I seemed to hit it off real well.  We were both smart alecks with quick ripostes in conversation.  I thought he might be someone I could learn from, as he'd been an attorney for about 10 years and this was only my second year out of law school.  He was a bit shorter than me, a preppy dresser, and he suffered from a limp caused by a club foot.  Not someone I was personally attracted to, and he was also  married, which was a deal killer as well.

It wasn't until we took an overnight trip to E. Kentucky for a case the spring of 1978, that I learned he regarded our relationship as something more than I did. Over dinner at the motel where we were staying (in separate rooms), he told me, "You know, you and I are going to sleep together before this is all over."   I was young, didn't know what to say without pissing him off,  so I didn't say anything.  That was the wrong thing to do because it only encouraged him.  He began a campaign of conquest.   On the way back to Lexington he got me to drink a few beers with him in his car and then tried to kiss me.  A week or so later, there was an attorney staff meeting and he passed me a folded note.  I opened it up and he had handwritten to me:  "I want to get into your pants."  I was so discombobulated by this that I threw the note away.  Sexual harassment was not  recognized as a  legal issue at the time.  Thus not only was there nothing on the law school casebooks on this, there was not training in the workplace to educate and protect like there is today.  This was 32 years ago.

For a while I managed to evade Ray and didn't formally answer or reject his advances.  During this time I developed a problem with my jaw.  I discovered at a Cincinnati Reds game that I could not open it wide enough to eat a hot dog.  As this problem did not go away after waiting several weeks, I made an appointment and went to see my dentist.  He examined my mouth, and informed me I had a condition called trismus, which was caused by stress .  He asked if I was suffering stress at work.  At this point, I broke down and, sobbing, admitted that I had been under some stress at work.   He prescribed valium. I only took it once because I discovered it just made me woozy and didn't change anything at work.  

Luckily I had a week away from my job that June at a National Institute for Trial Advocacy Seminar at Northwestern Law School in Chicago, which enabled me to get some distance and a better perspective on my situation.  By the time I returned from Chicago, my jaw had relaxed and I had decided what I was going to do.

I told Ray that I was not interested in having a relationship with him.  I thought that would be the end of it but I was wrong.  Ray reassigned  my significant cases, moved me from my window office into an interior, shared office with an investigator, and refused to talk with me whatsoever.   Finally, in August, after a month and half of this sort of retaliation, I quit my job.  I went to my supervisor's boss and told him exactly why I was leaving.  His immediate reaction was, "Well, I guess I can't tell you dirty jokes anymore."   This confirmed my suspicion that if I  made public the real reason for leaving, my career as an attorney would be toast in Kentucky and probably anywhere else for that matter.  I simply knew that I could not continue to work under these conditions.

However,  rather than try to find other employment, I decided to take the  retirement money I had accumulated in the two years of working for the government and use that to travel to Europe.  Which I did.  And while there, through a marvelous stroke of serendipity, I applied and was accepted into an LLM program of International Law (actually more European Community Law) at the Vrije Universiteit Brussel.  So I managed to take make something good come from a bad situation.  And received an advanced degree, cum laude, that I was able to use to propel me out of Kentucky and find a job in D.C. with the federal government.

But all of the negative memories surfaced 13 years later when Clarence Thomas was nominated to the Supreme Court.  By then I had moved all the way across country, been married with three kids, and had held down three different attorney jobs since leaving Kentucky in 1978.   Ray, too, had gone on to an important local elective office in Kentucky.

Interestingly enough, in 1989 I had travelled to San Diego for training in EEOC law after being appointed the attorney in charge of workplace discrimination in my then-office.  The woman who did the training at UCSD had worked at the EEOC as an attorney under Thomas and she had nothing good to say about his competence.  She never mentioned sexual harassment, but had a lot to say about his legal inabilities.  I called her after his nomination was announced and left a message asking if she would speak out about him, but never heard back from her.  Given what happened to Anita Hill, I am not surprised.

I  tried to do my part by writing to my Senators.  I  found it hard to put my personal experience in the letter I sent  to Slade Gorton trying to explain why Thomas was not ethically qualified to be on the Supreme Court.  Hell, I'm having a damned difficult time of putting it down here right now.  Because I've seen what happens to women like Anita Hill.  But if those of us who have experienced this type of treatment do not speak out about it, then it is like it never happened.  And when someone does speak out, their experience is not recognized or validated. 

A number of  years ago, Judge John Coughenour, a Reagan appointee to the US District Court in the Western District of WA, spoke to the attorneys who I work with.  He said that before his daughter became an attorney, he disbelieved the stories he had  heard concerning sexual harassment in the legal profession.  Never happened to him.  It took his daughter telling him about her experiences to change and make a believer out of him.  I would hope that it does not take your daughter telling you to make a believer out of you.

It happens.  It should not.  And when it does, there should be consequences.  Because there's already enough collateral damage.

Friday, May 14, 2010

A Defiance, OH, story

I grew up in Defiance, OH, a town of around 16,000 in the NW corner of Ohio midway between Fort Wayne, IN, and Toledo, OH.  We moved there when I was 4.  My father had finished his pediatric residency at Denver General Hospital and he wanted to practice medicine at the Defiance Clinic, which  his grandfather and uncle, and several other doctors had founded in Defiance a number of years prior to 1956.

Defiance was a sleepy backwater but occasionally there was an event that caused great excitement in the town.  Like when the Cisco Kid visited.

But the event that I remembered recently was when Judith Richards married Bob Hope's son.  This happened in the mid '60's.  Judith Richards' father had been the minister at the Methodist church in Defiance, but differences with the congregation led him to leave the church several years prior.  I understand from my friend, Julie, whose grandparents had been members of the church, that he managed a dry cleaners in Defiance after his departure.

Judith Richards graduated from Harvard Law School in 1964 after attending Wellesley College.  I don't know where she met Bob Hope's son, but the occasion of their wedding was a very big deal in my small town.  I'm sure that the wedding was a vindication for Reverend Richards in some small measure, although it was held in St. Mary's Catholic Church because the Hopes were Catholic.  In those days there was no question that if you married a Catholic, it had to be "in the Church."

A number of movie stars and celebrities like Liza Minnelli, Toots Shore, and Phyllis Diller, came to their wedding, causing great excitement in Defiance.  One of them,  Katherine Crosby, the wife of Bing Crosby, stopped at Daoust Drugs on Clinton Street and purchased some tamapax.  She didn't have enough cash, so she wrote a check  for $1.00 to the drugstore.  This was in the era before credit cards.  Daoust Drugs proudly displayed that check for a number of years.  I don't think they ever cashed it.  My initial reaction to this, was that movie stars writing checks was a great money making device, since small businesses probably were more impressed with the autograph than obtaining the money from the check.

Judith Richards Hope wrote about her Harvard Law School experiences in a book titled Pinstripes and Pearls.  She became quite successful and was something of a power in the Republican party.   Ronald Reagan nominated her for a seat on the DC Court of Appeals.  Unfortunately, she was not confirmed by the Senate and the seat was vacant until George HW Bush became president.  He then nominated Clarence Thomas for that seat.  I have some regrets on that score.

Thursday, May 13, 2010

Waiting is the hardest part

Surgery to excise the malignant lymph node and submit it for testing to determine if it had the EGFR mutation went smoothly.  My friend, Diane picked me up and we were at Group Health at 10:45.  An unexpected cancellation moved me ahead from the original 12:45 appointment for the operation, and I was in by 11:30 and out of the operating room by 12:30.  They gave me a local anesthetic that worked most of the time.  I was in a pleasant somnolence when it failed and it was rather like a large electrical shock.  Fortunately when I screamed, the nurse anesthestist increased the dosage and the rest of the operation went without a hitch.  With about an hour's recuperation, I was home by 2 or 2:30.

Hopefully the node will be sent to the UW to do  the EGFR mutation testing, so the results will be back next week rather than in 2-3 weeks.  Until then it's a waiting game.  I'm on heavy strength pain meds to stave off the reaction to the surgery.  The nurse yesterday told me to stay on top of this because if I don't, catch up is not easy.  And being in a lot of pain impedes the healing process.  The drugs help with the anxiety for now.  After that, we'll have to come up with other distractions.

Wednesday, May 12, 2010

Surgery has been postponed to tomorrow, May 13

I really don't know why but have several theories on this.  I think the doctor who was scheduled to do the surgery thought it was going to be a needle biopsy again, but when I explained about removing the lymph node to do testing for the EGFR mutation, he reconsidered and now it is being treated more like major surgery than an office procedure.

At first I was instructed to do a sterile wipe down after showering this evening and in the am, but when I showed them the ulcerations on my legs (courtesy of the Tarceva) they backed off and will do a sterile wipedown of the neck region prior to surgery tomorrow.  I had another creatinine blood test done to make sure my kidneys are operating ok and an EKG.  I assume if the results are poor, I will find out tomorrow when I show up at 10:45 for the pre-op.  Surgery is set for 12:45 and should take a half hour with another hour to hour and a half for recovery.  Then we hope that the tissues are sent to UW or the place in San Diego where they have a 5-7 day turn around time for the results as opposed to the 2-3 weeks that GH was saying it would take.  My new oncologist at GH, Dr. C, seemed to be on board with the expedited testing.  If I remind him about that, would I been seen as a pushy patient?  Hmm......

Tuesday, May 11, 2010

Lynn Redgrave, RIP

I didn't realize that Lynn Redgrave died of metastatic breast cancer.  The blogger, Cancer Bitch, does a wonderful memorial to her that I've attached to the title of this post.  Be sure to click on the articles she cites.  The Redgrave family was definitely quirky in the most British fashion.  I appreciate that Ms. Redgrave was open about her experiences with breast cancer.  Go.  Read the whole piece.


Monday, May 10, 2010

Surgery set for 1pm Wednesday, if

I get over this bad cold.  Home today running a 100 degree temperature and all the aches and pains that normally come with a cold.  In thinking back, however, this is the first one of any severity I can recall since my diagnosis.  So, fingers crossed that I will be recovered sufficiently Wednesday to have the lymph node excised so the EGFR mutation testing can be done.  It seems that UW can do the testing and get the results back in 5 days.  Hopefully we will know something more by next week.

If the EGFR mutation comes back negative, then they will check to see if my tumor is positive for something called the ALK mutation.  This study shows exciting promise for a small subset of NSCLC cancer patients, and it is becoming more widely available thanks to money from the stimulus bill.  So now you can say that you know of one good thing the stimulus bill funded!

Friday, May 07, 2010

The Second, Second Opinion at Seattle Cancer Care

My daughter made it home safely last night and went with me to SCCA where we were joined by my friend, Diane.

Rather than rewrite what happened, here is the letter I sent to three of the Group Health oncologists following our appointment (and after a celebratory brunch at Portage Bay Cafe).  Edited to note that the primary author was my daughter so that I got the medicine right--Thanks dear!

Dear Drs. C***, F****** and C*******:

I am writing to update you on my meeting today with Dr. R***** M***** at SCCA. Dr. M***** reviewed the medical records GH sent over yesterday, which were requested Monday. Unfortunately, the latest ct scan read from April was not included in the records, but luckily I had printed a copy and was able to provide it to Dr. M***** during our appointment.

Based upon his review of the records, and his examination, Dr. M***** recommended that I discontinue taking the Tarceva tomorrow. The substantial increase in tumor size coupled with the toxicity, particularly on my legs and arms, led him to the conclusion that I had failed second line therapy with Tarceva at this point, or at the very least, the toxicity far outweighs the observable benefits at this point.

Dr. M***** indicated that he would like me to pursue a clinical trial at SCCA for patients with lung cancer with an ALK mutation. Two of the study's exclusion criteria include: less than 10 pack year smoking history (which includes me), and EGFR-negative tumors. Unfortunately, due to the insufficient tissue sample done on my CT-guided biopsy this fall, EGFR studies have not been performed on my tissue samples. Dr. M***** recommended that I have these studies done at this time to determine whether I would be eligible for this clinical trial; he stated that he suspects that I am EGFR-negative, given my poor tumor response to Tarceva, but I cannot be consented for the trial without this study. Additionally, it seems to me that these studies would be particularly indicated as I move forward with therapy, as the tumor growth over the past two months seems to indicate that I have failed second line therapy with Tarceva, and I would assume that this information would be useful in directing us for future treatments, regardless of whether I participate in the trial.

Dr. M***** was interested in discussing this with you today; he did try calling Dr. C******** while we were in the office, but unfortunately, he was out of the office. Dr. M***** did leave a voicemail, and would like to get in touch with you as soon as possible regarding this; I am also cc'ing him on this email if that is an easier method of communication for you.

I would like to proceed with this testing as soon as possible, in the next week if feasible. Dr. M***** suggested that we excise my subclavicular lymph node that had previously been biopsy positive; he noted that this would be a relatively simple procedure, and should offer plenty of tissue for all of the necessary studies. Please let me know as soon as possible if you agree with this plan and approach, as I would really like to get moving on things.
Thank you very much for your help, and I look forward to hearing from you soon.


Regina Cullen

In short order, I heard back from Dr. M***** at Seattle Cancer Care:

Dear Ms Cullen

Dr C******** was kind to call me in his day off the clinic and we discussed obtaining a biopsy of the LN in your L lower neck. He told me that he will confirm that there is not enough tissue left from the previous biopsies and would organize the new procedure. We briefly discussed the possibility of you receiving therapy here in this clinical trial with a pill and he seems to think that it would be possible

I hope you have a good weekend

Then I heard back from Dr. C******** at GH:
I see Dr. Martins sent you a note about our phone call. We will try t arrange for the biopsy. The test itself takes about two to three weeks to gt an answer.
So that is where we stand.  Maybe I WILL be able to wear shorts this summer! 

If I do not test positive for the ALK therapy, we will next look at radiation and/or cyberknife treatment.  But fingers crossed for the ALK.

And I hope all of you have a good weekend as well.


Wednesday, May 05, 2010

Second Opinion at Seattle Cancer Care Alliance Friday

I notified Group Health last Friday that I would be seeking a second opinion.  And without waiting for their ok, I called Seattle Cancer Care Alliance and set up the appointment with Dr. M. 

Hell, if I can spare $1000 for Scooter's surgery, I can do the same for me.  But it seems, at least from an email received on Monday from GH,  that GH will pay for this time.  Like Aladdin, I have three 'free' second opinions  as a part of my GH insurance.  This will be my second, second opinion.  Can't get a referral for ongoing treatment from a lung cancer specialist when there is no lung cancer specialist on staff, but I can get a second opinion.

So I hope that this appointment leads to a more aggressive approach, and some thinking outside the box.  My daughter is taking her pediatrics exam early tomorrow in Pocatello, ID,  and then driving for 12 hours back to Seattle, so she can attend with Diane and me.  Fingers crossed she will make it safely.

Lung walk 2010 photos

Here they are.

Tuesday, May 04, 2010

Lung Walk 2010 Update

I've been waiting until I get the photos from the Lung Walk, 2010, before posting the news about the walk.  But the professional photographer hired to take pictures has not posted any of our team that were taken early in the morning when only about half of us were present and my friend, Spot, has not yet emailed those photos that she took.  So, instead, I am posting the print that was the final project of my son, Matt, in his printmaking class last quarter. It's taken from a photograph from the Chinese Ice festival held earlier this year.  And, since Seattle is suffering through February weather in May, it seems rather apropos.  Plus. Matt showed up and walked with me on Sunday.

Dr. Robb Glenny,Professor of Medicine and of Physiology and Biophysics and the Head of the Division of Pulmonary and Critical Care Medicine at the University of Washington was the kickoff speaker for the walk.  He talked about how dismal the research is in all areas of lung disease.  Which we already knew.  But then he said that is why events like the Lung Walk are so important to raising awareness and raising funds for research into cures for COPD, emphysema, asthma, and lung cancer.

Which we did.  The event raised over $125,000.  My team was wildly successful both in fundraising and in feets on the ground.  I am both humbled and energized by all of you.  As of tonight, we have raised $2,965.00.  This is up from the $2700+ that we showed on Sunday, which was enough to vault us into 2d place in individual rankings and 6th place in corporate rankings.  We even beat well known companies like Boeing Airline Marketing and KISS 106.1.  Woo Hoo!!  And 15 of the 17 who promised to show up on Sunday, braved the grey chill and came to UW and walked with me.  For that, they were awarded grey tshirts emblazoned with "DeFeet Lung Cancer" in red gothic letters by me.  Go Team!

The walk through the UW campus took us to parts that I had never been too.  I especially enjoyed the salmon fingerling pond and the huge evergreen stump that turned out to be a fake.  I told my teammates to save their tshirts for next year, so we could all wear them once again.  We talked about adding years to the tshirts. And perhaps there will be a few more walkers who will need additional tshirts.
Thank you to everyone who sent good thoughts, donations, and turned out.  It truly was a day to remember.


Monday, May 03, 2010

A Group Health commercial

Now it is all explained. I went to You Tube and asked for all Group Health commercials. If I had had a treating doctor prior to becoming a Group Health member, I could have retained him/her.

However, now that I need the services of a lung cancer oncologist, I appear to be SOL. Thanks Group Health!

ps. I have scheduled a second opinion/consult with Seattle Cancer Care this Friday at 10 am. Wish me luck.